Karina’s Story

Site created on February 15, 2023

Welcome to our CaringBridge. We are using this site to keep family and friends updated in one place. It's been quite the roller coaster, but we now know Karina has severe aplastic anemia (bone marrow failure). It is a very rare disease with a long road ahead of us, and the only true cure is a bone marrow transplant. She doesn’t have a family match, but we are so grateful she has 10 unrelated matches through the registry (although it’s more risky if she goes that route).

If you are looking for ways to help us or families like ours, you can search “Be the Match” to add yourself to the bone marrow transplant registry. See “ways to help” for a link to the meal train. For those who have been asking for other ways to help, Venmo (@Khloe-Haney) or our GoFundMe (in ways to help section) to help cover medical bills, Meal Train, and gift cards (Sprouts, Trader Joe’s, Costco, Amazon, Walmart) are also helpful. We appreciate your support and words of hope and encouragement! Thank you!

Newest Update

Journal entry by Khloe Haney

We finally have some time to update here again! Thank you to everyone who has continued to check in and show your love and support for our sweet Karina.

It's been nearly 9 months since her first symptoms and ...
3 bone marrow biopsies and aspirates.
4 blood transfusions.
6 months with a PICC line.
19 nights in the hospital.
22 platelet transfusions.
47 (and counting) visits to the CCBD clinic.
528 (and counting) test results (with hundreds more labs within those results) ...
and she made a full response to her treatment!

She hit the bare minimum of a complete response on her deadline day (July 31) and was at least able to get her PICC line out so she could have a few normal weeks of summer and swim in the pool! It was kind of a bummer at first with her bare minimum response - she needed 10 hemoglobin, 100 platelets, and 1,000 neutrophils to not go to transplant. She was at 10.1 hemoglobin, 100 platelets, and 2,700 neutrophils. Since then however, her numbers have skyrocketed and she's done so great! At the last appointment (since her complete response, we've been able to cut down our clinic visits to once every two weeks), her platelets went down a little and neutrophils went up, but that's likely because she caught a cold, so that's a normal response and nothing to be concerned about at this point. With her PICC line out, she has to get big pokes with every visit now, but the clinic has been great with it, and she's been so strong! 

We still have our emotional moments and worry about what may happen in the future if she relapses or if it develops into something else like AML or MDS, but for now we're happy with where she's at and we're living our new normal.

In the meantime, she'll continue her medications for 1-2 more years, and will get her nebulizer in the clinic once a month and continue her twice a month blood draws. We also officially set the Make-a-Wish trip for June of next year, so that's something to look forward to as well!

We probably won't update here for a while unless something major happens since she's doing so well, but we're so grateful for the support everyone has shown for Karina and our family. We love you all!

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